I first met Lisa Faust at the Symposium on Viruses in 2008. She was at a table with a group of women all of whom were battling a similar sounding illness. They were definitely the acute onset infectious disease subset. My mouth dropped as I listened to their stories; some were on complete disability, others had had harrowing but slow recoveries – nobody was close to healthy. Most counted themselves very lucky to be able to get to the conference at all. There were Montoya patients on Valtrex, Chia patients on interferon, other patients on Lyme treatments.… Read More
Dan Moricoli was no shrinking violet before he came down with chronic fatigue syndrome (ME/CFS) three years ago. A business owner, internet marketer, motorcycle racer, skiing enthusiast and deep-sea fisherman Dan was, in fact, something of an adrenaline junky. At sixty Dan’s idea of coming down from the stress of work was to race motorcycles. But this disease got him, as it does with everyone, to reassess his priorities. After getting stricken with a severe case of ME/CFS on a fishing trip Dan turned his considerable talents toward an area he knows very well, the internet.
The internet is, of course, an essential component of many ME/CFS patient’s lives; for the most severely ill of us it can be the only means of access to the outside world.… Read More
That’s right – in the midst of the greatest economic contraction since the depression the NIH has, all of sudden, found itself in the greatest single expansion in its history. How and why demonstrates how much influence one Senator can have. Desperate to get Arlen Spectors vote on the stimulus package, the Obama administion acceded to a 30% increase in the NIH’s already enormous budget. This year the NIH will have to find a way to spend 10 billion dollars more than it did last.… Read More
Reno (the Littlest Big City in the World’) is not your typical conference destination but it was hard to imagine a better spot for the 9th International IACFS/ME meeting. Much water has passed under the bridge since the plight of those Incline village residents made headlines across the country thrust this disease back out into the open. At the time Dr. Peterson was living the good life with a small practice in a resort town in Sierra Nevada ski country.… Read More
I didn’t intend to blog about my trip to the conference but the trip was for me, like for other ME/CFS patients, half the battle. Several people I talked to at the conference noted how difficult travel was. My ability to travel has increased greatly over the past few years. I no longer worry about being done in by fumes at the airport or of being unable to breathe on an airplane. Nor am I worried about the physical exertion of travel – as disturbing as that can be. But this trip demonstrated how tenuous that grip on health can be.… Read More
Dr. Hanna at the NIH has repeatedly said that given the tight budgetary times there’s just no money for ME/CFS. A look at NIH funding across the past few years suggests, however, there’s more to the issue than she suggests. Underneath the seemingly placid surface of a stable budget a fierce fight goes on every year with some diseases winning big and some losing big; a tight budget does not mean that a disease is doomed to a stagnant budget.… Read More